My Research Results is a national service and resource centre providing genomic information to participants and their families that has been generated through research.
My Research Results connects researchers, research participants and clinical genetics services.
We help researchers develop their ethically-defensible plans, including notifying research participants of clinically-actionable genomic results based on national and international guidelines. We support and provide information to research participants and facilitate referral to a clinical genetic service.
Who we are
My Research Results is a national-evidence based service and resource centre, working with researchers to return clinically-actionable genomic information to research participants.
My Research Results is operated by qualified genetic counsellors, supported and informed by expert clinicians, researchers, educators and consumers. Genetic counsellors are allied health professionals who have specialist knowledge and skills in human genetics, counselling and health communication.
We are based at the Kinghorn Centre for Clinical Genomics at the Garvan Institute of Medical Research, Sydney.
What we offer
At My Research Results, we believe in the value of returning clinically actionable results to research participants through an evidence-based process. The National Statement on Ethical Conduct in Human Research states that researchers must have an ethically defensible plan for managing research results. However, it is up to researchers to determine what that plan will look like and how it will be enacted.
We are here to bridge that gap and support researchers to return results to participants in an ethical, evidence-based and supportive way. We provide the following resources and services to make this happen:
- Support for researchers who are developing an ethically defensible plan for managing clinically actionable genomic information
- Assistance with drafting protocols and consent forms
- Notify participants using an evidence-based process, including telephone genetic counselling by qualified genetic counsellors
- Online resources available to research participants
- Expert advisory committee including clinicians, researchers, educators and consumers
- Expert advice on gene lists and variant interpretation
- Data stored in secure database, which provides participants access to their own information
- Reporting outcomes back to researchers
- Collaborative service agreements between researcher and My Research Results
How it works
At My Research Results, we start by understanding your research and how we can help. My Research Results is a flexible service and can be tailored to your project needs. We can partner with you at any stage of your project. If you’re just starting out, or already have results you’d like to return to participants, we can work out a way to help you.
If you partner with us, we will develop a tailored service agreement outlining roles, responsibilities and pricing for your project. Once you’ve completed your research, we can help with identifying clinically-actionable health information, notifying participants of the information and supporting them through the process.
We also provide genetic counselling to research participants, decision support around whether to receive their results and referral to a clinical genetics service for confirmatory testing and ongoing care.
Collaborators and partners
Australian Parkinson's MIssion: https://theapm.org.au/
Cancer Council Victoria: https://www.cancervic.org.au/
Publications
Willis, A.M., Terrill, B., Pearce, A. et al. My Research Results: a program to facilitate return of clinically actionable genomic research findings. Eur J Hum Genet (2021). https://doi.org/10.1038/s41431-021-00973-z
Related resources and publications
Forrest L, Young M-A. Clinically Significant Germline Mutations in Cancer-Causing Genes Identified Through Research Studies Should Be Offered to Research Participants by Genetic Counselors. J Clin Oncol. 2016 Mar 20;34(9):898-901.
The National Statement on Ethical Conduct in Human Research
